Re: Question and a Vent- Thank you!

[Guest guest]

Hi everyone:

It has been a real help to read these posts because I don't know another parent

in person who is dealing with these issues.  Now at least I know that my son's

OCD is " normal " as far as OCD goes!  All the washing, rituals, and rigid

behavior.  I feel so bad sometimes because I lose my patience with him.  I've

read the books, been through the OCD/ERP training and know that its the OCD and

not MX....but there are days when I just don't have the strength to use all

those tools.  Especially when his twin brother is pouring gas on the fire by

threatening to " out " him to all his friends or chasing him around the house

threatening to touch him.  It makes me crazy! 

BJ, thanks for your kind words, and OCDmom hang in there.  All we can do is the

best we can do.  Today is another day and I'll try again to help my son all I

can by helping him to help himself.  We've had some success on the long

showers/soap use with doing daily graphs.  He uses a timer in the shower and we

try to work on bringing down the time by one minute each day.  I make a graph

so he can see his progress and he seems to like that.  We had gotten his

showers down to less than 5 minutes with just a few squirts of soap.  We

stopped graphing for a while but now it's gone haywire again and now we're back

up to 15 minute showers and I don't even know how much soap, except we're out of

it constantly.  I'll try the graph technique again and see if we can make any

progress.  The hardest thing is that the gains we make aren't permanent. The

OCD just keeps morping into other areas. 

Mx just started taking effexor last week and I'm trying to get him in to see

another specialist in CBT/ERP.  The one he has been seeing only has hours

during the day and we need to step up the treatment and I'm hoping to find

someone who can take him after school a few times a week.  Best to you all.

Question and a Vent- Thank you!

 

Thank you to all who responded to my post- I am truly touched by the support and

kindness of this group. It really helps knowing I am not alone.

I am definitely going to look into PANDAS. I read here recently about a program

at University of Oklahoma where DS could get tested? I will try to find the info

in the archives, but if somebody has that phone number, could you please post

it? We are less than a four hour drive from there, so that would work out well.

BJ, I can't believe that testing site asked who has accomodations in front of

everyone! It took awhile for DS to get back into the therapist- she was booked

solid, then she was gone for a long Christmas break, so he hasn't had many

sessions to really get into the ERP yet. Even though he knows what he needs to

do, like " switch and scramble " with his rituals, I think it's still too hard for

him to do it much. He does get distracted by video games, although he'll even do

repetitive things with his character in the video games sometimes, and it can

sometimes take him 40 minutes of rituals before he can even get the game

started. One of his main contamination worries is getting his game controller

dirty or sticky, and he does a lot of handwashing, then refusing to touch

anything but his controller after he has washed...changes the volume on the game

with his elbow, wants me to put in the blutooth headset, etc. Being able to talk

with kids from school over the blutooth while playing video games has been

really good for him, though, because he is being really shy at his new school.

I can totally relate to going through middle school again! DS just can't

focus, and I have been having to read to him, too, and DH and I have to help him

every step of the way through homework or nothing would get done.

Dina, DS is taking 20 mg of Paxil- I know the max dose is 60 mg. He will be

seeing the psychiatrist again mid-Feb. Not sure if he'll want to increase it to

40 at that time or keep waiting for change with the 20. I hear you about the

support other people get when they share their " normal " problems openly with

others- like your friend who lost her best friend. It's really not right.

, as DS has become less and less functional, I have thought about

homeschooling. I know there are a couple kids at school who are bothering him-

they take his drink at lunch and pass it around, and sometimes he never gets it

back, and gets back in line and has to buy another one. I have emailed the

assistant principal twice since he supervises that lunch period- twice he has

written back that he will talk to DS about it, keep an eye out, etc., then does

nothing! So frustrating. One of the kids who's bothering him was actually on

Supernanny when he was younger- Lol!

I plan to email his school counselor to look into a 504 for him- I'm especially

concerned about him having extra time on tests, and him not being punished for

tardies because it is such a struggle for him to get to school on time.

(shmurph), I am so sorry to hear about your struggles with your non-OCD

DS. My DS's therapist has OCD herself, and has shared how she struggled with a

sister who constantly gave her a hard time about her OCD, and would threaten to

tell all the kids at school.

Thank you again to all who responded! I am definitely feeling more hopeful and

less alone!

ocdmom

[Guest guest]

Hello ocdmom,

My life has certainly been enriched by the support and kindness on this group. 

It really cuts through the isolation that I feel and that other parents have

commented on.

 

I have the info on the study in Oklahoma that you are looking for:

Madeleine W. Cunningham, Ph.D.

Lynn Cross Research Professor

Microbiology and Immunology

Director, Immunology Training Program

University of Oklahoma Health Sciences Center

Biomedical Research Center Room 217

975 NE 10th Street

Oklahoma City, OK 73104

Tel

Lab X47455

FAX

email: madeleine-cunningha m@...

Dr. Cunningham is very well respected, and it trying to develop a diagnostic

test for PANDAS.  Although the research is very promising, it is underfunded. 

She must charge $400 to run the test.  My understanding is that this amount

doesn't come close to covering her cost.  Let me know if you need more info.

 

Best wishes,

Peggy

Subject: Question and a Vent- Thank you!

To:

Date: Thursday, February 4, 2010, 8:00 AM

 

Thank you to all who responded to my post- I am truly touched by the support and

kindness of this group. It really helps knowing I am not alone.

I am definitely going to look into PANDAS. I read here recently about a program

at University of Oklahoma where DS could get tested? I will try to find the info

in the archives, but if somebody has that phone number, could you please post

it? We are less than a four hour drive from there, so that would work out well.

BJ, I can't believe that testing site asked who has accomodations in front of

everyone! It took awhile for DS to get back into the therapist- she was booked

solid, then she was gone for a long Christmas break, so he hasn't had many

sessions to really get into the ERP yet. Even though he knows what he needs to

do, like " switch and scramble " with his rituals, I think it's still too hard for

him to do it much. He does get distracted by video games, although he'll even do

repetitive things with his character in the video games sometimes, and it can

sometimes take him 40 minutes of rituals before he can even get the game

started. One of his main contamination worries is getting his game controller

dirty or sticky, and he does a lot of handwashing, then refusing to touch

anything but his controller after he has washed...changes the volume on the game

with his elbow, wants me to put in the blutooth headset, etc. Being able to talk

with kids from school over the

blutooth while playing video games has been really good for him, though,

because he is being really shy at his new school.

I can totally relate to going through middle school again! DS just can't

focus, and I have been having to read to him, too, and DH and I have to help him

every step of the way through homework or nothing would get done.

Dina, DS is taking 20 mg of Paxil- I know the max dose is 60 mg. He will be

seeing the psychiatrist again mid-Feb. Not sure if he'll want to increase it to

40 at that time or keep waiting for change with the 20. I hear you about the

support other people get when they share their " normal " problems openly with

others- like your friend who lost her best friend. It's really not right.

, as DS has become less and less functional, I have thought about

homeschooling. I know there are a couple kids at school who are bothering him-

they take his drink at lunch and pass it around, and sometimes he never gets it

back, and gets back in line and has to buy another one. I have emailed the

assistant principal twice since he supervises that lunch period- twice he has

written back that he will talk to DS about it, keep an eye out, etc., then does

nothing! So frustrating. One of the kids who's bothering him was actually on

Supernanny when he was younger- Lol!

I plan to email his school counselor to look into a 504 for him- I'm especially

concerned about him having extra time on tests, and him not being punished for

tardies because it is such a struggle for him to get to school on time.

(shmurph), I am so sorry to hear about your struggles with your non-OCD

DS. My DS's therapist has OCD herself, and has shared how she struggled with a

sister who constantly gave her a hard time about her OCD, and would threaten to

tell all the kids at school.

Thank you again to all who responded! I am definitely feeling more hopeful and

less alone!

ocdmom

[Guest guest]

Hi ocdmom, is there any way you or dad could go have lunch with your son one

day? Sort of " make your presence felt " as I really hate that's happening to

your son! Do those 2 kids sit at the same table as your son or just walk over

to him?

I'm glad he's at least telling you about it. When my sons were in middle

school, the students had to sit in the gym in the a.m. before time for school.

The twin told me how this boy was taking 's lunch box each day and

looking through it. Don't think he took anything out ever but couldn't

stop him (didn't try I don't think) and twin wouldn't say anything either (I

wouldn't have either at that age, must have got it from me!). LOL, I asked my

oldest son (in high school) if he knew the boy, and he knew his cousin. I told

him to tell his friend to tell his cousin to tell that boy that YOU (oldest son)

said to stop bothering 's lunch box. (older son was pretty well known,

that this might have an effect) Can't recall how it ended, but shows how " low "

I was willing to go, LOL. Sigh! I will say that same boy was nice to

later on in high school and even now (age 21). A lot of the students who

bothered in middle school " matured " later in high school and were nice

to him, or at least no longer bothered, made fun of him.

Anyway, even if you or dad could just stand from afar - with that asst principal

- and watch at lunch (where 2 boys don't know you're there), perhaps THEN

something would be done by asst principal.

Good luck with the 504. We got one for too.

>

> Thank you to all who responded to my post- I am truly touched by the support

and kindness of this group. It really helps knowing I am not alone.

>

> I am definitely going to look into PANDAS. I read here recently about a

program at University of Oklahoma where DS could get tested? I will try to find

the info in the archives, but if somebody has that